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Living with dying

Insufficient hospice care

A large percentage of people in the UK still die in hospital 47%, 23% of people die in their own home. Only 6% of people die in a hospice (The National End of Life Care Intelligence Network - Variations in Place of Death in England December 2016).

It is now NHS policy that everyone with a life-threatening illness should have access to appropriate palliative care services, the current government strategy is to support more people dying at home.

“70% of people would prefer to die at home” - Dying Matters March 2017.

Of those who are admitted to hospice care in the UK almost all have a diagnosis of cancer. This is partly because of funding (which relies strongly on cancer charities), partly because less is known about the needs of non-cancer patients, and partly because it can be very hard to estimate how long non-cancer patients are likely to live. While there are limited hospice beds and the majority are short stay units the current approach is to admit patients on the basis of their need (i.e. difficult symptom control and/or immediate dying) rather than their type of disease (e.g. cancer).

Even those with cancer may find it hard to obtain a bed in a hospice when it is needed. One woman we talked to, who had breast cancer, spent a month in a hospice. She went home and assumed that she would be able to pick up the phone and go back to the hospice if she needed to, but was disappointed to find that this was not so. She said that if she became very ill she might be offered a palliative care bed at the local hospital, but not a bed in the hospice.

 

She would like to be able to return to the local hospice but beds are not always available.

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Age at interview: 61
Sex: Female
Age at diagnosis: 59
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As things are going to progress and the illness takes its course, what sort of care do you think you will need?

Yes. I'm definitely going to need more care than I have at the moment and that is itself very difficult because... Well, let's go back to when I had this infection and this shunt. I felt I was very ill at that time and I thought I was going to have open access, as it were, to the hospice that I've been in for a month, but sadly that's not the case. You can't just pick up the phone and say, 'I'm not well, can I come back in?'. 

Once you're out of the  hospital system you then become the responsibility of your GP, apparently and so if I'm not well I have to call on the GP and then he would refer me back to hospital or some respite care somewhere, if there is some available. 

So are we back to resources again? 

Yes, we're back to resources again, that's right. There just aren't any. There aren't any. And what I suppose I will end up doing is paying somebody to look after me full time here in my own home and... yes.

 

Says that she might be offered a palliative care bed in the local hospital but not in the hospice.

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Age at interview: 61
Sex: Female
Age at diagnosis: 59
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You mentioned that if you wanted respite you contacted your GP and he would look whether specific facilities were available. Were you saying that you were almost quite in favour of the care provided in that setting? That you would opt for that? 

To go back to the hospice that I've been in?

Yes, did I get that  right?

Yeah, I just assumed that's what I could do and I was wrong. I was wrong to make that assumption.

But I was thinking you'd thought about it just as a sort of break?

Yes.

But supposing you wanted that for permanent care, instead of for nursing care?

I would have to provide it [care] for myself. I've since learnt that I've got to provide it for myself unless I'm so ill that the doctor says, 'Oh no, you've really got to go to hospital'. Then I gather he can arrange something for me somewhere but it won't be at the hospice I've been in, it will just  a local hospital somewhere that's got a bed. A palliative care bed, but if it's just a case of me being generally under the weather and not able to do much for myself at all, but not really needing nursing care, it's up to me to find somebody to pay for, somebody to be here to live with me in my own home. 

Patients who don't have cancer find it even harder to find a bed in a hospice. Some of the people we talked to had distressing symptoms and believed they would benefit from hospice care. A woman with chronic obstructive pulmonary disease (lung disease) explained why she would like to have the opportunity to enter a hospice or a similar place when the need arose.

 

She would like access to hospice care or something similar when she needs it.

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Age at interview: 61
Sex: Female
Age at diagnosis: 57
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I'm living on my own. As I say my daughter is away and the one thing I do not want to have to do is to burden my daughter. Not that she would look at it with as a burden, I know, but she's got her life and her family. Living here on my own. I would until I really couldn't. 

My other daughter... no way could I ever go; not that... I think she would try and she's... has problems of her own and... we just don't really get on if we're together for a long time. Short spaces of times and we're fine but not for a long time and so that could never be a consideration. 

I have a very good friend, a neighbour who comes in and helps me now and does a lot of work for me but again she's older than I am and there'll be a time when she won't be able to do it either and ok I've got church people but you can only put onto them, or not put onto them. I mean people are willing to help but when it becomes sort of day in day out it's really too much to ask them to do it, so that's why I am looking for either a rest home that... actually nursing home that would... actually deals with, that specific deal with life threatening diseases and knows how to cope with you or a hospice that one can go into, yes.

Another woman, who also had lung disease, explained why she would like to have the option of hospice care. She wanted to die with dignity, in a peaceful setting, with help and support, and she wanted good pain control. She also wanted pastoral care to prepare for her death, and support for her teenage children. She was angry about inequalities in funding and her inability to find a bed in a hospice.

 

Suggests that hospice care would allow her to die with dignity.

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Age at interview: 41
Sex: Female
Age at diagnosis: 24
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You were saying that a friend of yours has died recently and it's been making you think about the care people have when they're dying '

Yes, very much.

' and what it might be like for you. Can you tell me a bit about that?

Well, she had a cancer, a form of cancer, she was given hospice care. She was given her dignity, she was allowed to have her dignity when she died. She was in the hospice with her family around her and her last few days made wonderful, you know, taken to the cinema and days out, so her family on her last few days had days to look back at, but where with my disease and people with other diseases which aren't cancer, we don't have that. 

We don't have the palliative care, which we should be getting. Some health authorities will have a palliative care unit but it depends if you live in the right road, really. It's the old postcode lottery. A few miles down the road from where I live there is palliative care but because I live 5 miles away from that, I don't get it. My Social Services only have ordinary home care, which is personal care, and anything else I have to ask for. There isn't a place for me to go for respite to give my family a rest; there isn't a support to help my family prepare for what lies ahead of us. 

I'm having to do it all on my own and try and cope on my own and try and prepare my family on my own when I should be really trying to take time to prepare for my ending and what I want to do, and have the time to do the things instead of losing my time preparing everybody else when I really feel it would be helpful if somebody was there to help me prepare them and let them accept it.

 

Says that she would have better access to good pain control in a hospice.

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Age at interview: 41
Sex: Female
Age at diagnosis: 24
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Ideally, what do you think you need?

Pain control is one thing that there is, with hospice care you have a pain management team. With non-hospice, you don't. There are pain clinics but they're few and far between and you're lucky if you get on to one. 

You have Macmillan nurses with cancers, with me we don't. We have the breathing nurses but when you bear in mind there's 3 nurses and there's probably 3 or 4,000 lung patients under their care they can't come and look after all of us. So you end up learning how to cope on your own. 

You have to rely on your GPs, it's okay if you've got a good GP and who is willing to come out. Some GP practices will come out when you call them; others will come out automatically. Once again it's the postcode lottery whether they've got the money to do it. It's not their fault if the government doesn't give the money. Also there's the chance to meet other people in the same situation as myself. 

Within the hospice care it's a peaceful, having visited friends in a hospice, there's a lovely peaceful, tranquil feeling' a feeling of reverence and total dignity. 

Where if I go for respite, it's in the local cottage hospital with lots of hip patients, etc... and the nurses have to take care of them first and sometimes you're forgotten in a corner. 'Oh well, she's young, she'll be okay.' But what they forget is yes, I'm young but my body's old and I need as much care as the 90-year-old you're helping to the toilet now.

 

She would like access to a hospice to receive good pastoral care.

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Age at interview: 41
Sex: Female
Age at diagnosis: 24
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What would you really like to happen? You say you'd like hospice care. You said why that's not possible. Given that reality, what then would you want?

The basic things I've been given from the District Nurse, like the bed and the oxygen machine and stuff. But there's... it's the pastoral care to help you prepare. The understanding. Knowing that there's going to be somebody there for my family afterwards. Prepare, you know help in preparing my family. I try to do as much groundwork as I can myself by going to the library and reading as much as I can and finding books which are the right books to give to my children to prepare them. 

I've written a poem for them, my son and I have recently written a song so that he's got something positive to work on when it's going to be a negative time. It hasn't been easy, there's been many tears while we've been doing it.

'I've got my religion, I've got my church but even there, you know it's one vicar who covers the whole parish. He's got everybody else and it's quite an elderly area so he's got a lot of elderly people to look after. And sometimes, because you're young, whether you're terminally ill or not, you get forgotten. You go by the by where with hospices you have the hospice chaplain who's trained and has got an understanding of waiting for death, more so than the everyday chaplain.  

 

Is angry that people who don't have cancer find it hard to get into a hospice.

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Age at interview: 41
Sex: Female
Age at diagnosis: 24
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I'm angry because the government doesn't make sure that everybody's equal. This is not right, this is wrong. There's so many people with so many different illnesses at so many different ages; you've got young kiddies. Things are beginning to change with the hospice care for children; they are beginning to take all different illnesses, which is brilliant. You know they need as much support as possible and bless their hearts. 

But also the parents who get ill, they need as much support as well, and I think the attitudes of this government and the medical people out there, they have got to look at everybody in an equal way. We've all got to be treated equally. 

Just because one person's got cancer you give them everything. Somebody else has got another disease, which okay it's not cancer, but it's equal to cancer, it's just as painful and may need just as much pain relief, support, understanding, pastoral care as the next person. So why are we treating people differently?

Last reviewed July 2017.

Last updated July 2017.

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